#hpm - Healthcare Social Media Transcript

6/27/12 1:01 PM

#hpm transcript
Healthcare Social Media Transcript
From: To: Wed Feb 29 18:00:00 PST 2012 Wed Feb 29 19:15:00 PST 2012 change time period

New ! Explore analytics for this time period: #hpm analytics Explore the world of healthcare social media: Healthcare Conferences - Healthcare Tweet Chats - Disease Hashtags Learn more about #hpm at The Healthcare Hashtag Project

FMDChat

Hi & welcome to #hpm chat abt #hospice & #palliative medicine, please take a moment to introduce yourself & say hello! I'm your host. #hpm
Wed Feb 29 18:01:06 PST 2012

PracticalWisdom

@AfternoonNapper Thank you! just lost power for a sec and lost Internet. Please give regards #s4pm Best Wish 4 2night #hpm Need zzzzz 2 nit
Wed Feb 29 18:02:09 PST 2012

rfberry

RT @FMDChat: Hi & welcome to #hpm chat abt #hospice & #palliative medicine, please take a moment to introduce yourself & say hello! I'm your host. #hpm
Wed Feb 29 18:02:15 PST 2012

rfberry

(Just so no one is confused) @FDMChat managed by @AfternoonNapper is hosting #hpm tonight in honor of Rare Disease Day #hpm
Wed Feb 29 18:03:11 PST 2012

aliciabloom

time to tweet on #hospice & #palliative care in #hpm chat! expect some #basketballwife tweets, too! it's a close game for #LaSalleMBB at GW.
Wed Feb 29 18:03:23 PST 2012

FMDChat

Today, for Rare Disease Day, we'll be discussing caring for the 350m ppl w/ >7,000 rare diseases, 95% of which have no therapy #hpm
Wed Feb 29 18:03:24 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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RossJeanette

hi Im jeanette ross HPM doc in san Antonio. will try to participate tonight while multitasking as always #hpm
Wed Feb 29 18:03:36 PST 2012

rfberry

-->Renee Berry here, looking forward to tonight's chat. Work with @goBeMoRe, was undecided abt new fb pages earlier but now like them! #hpm
Wed Feb 29 18:04:11 PST 2012

FMDChat

Indeed, some of you might know me as @AfternoonNapper. I am a fibromuscular dysplasia patient & manage http://t.co/dYXNIbTk. #hpm
Wed Feb 29 18:05:14 PST 2012

FMDChat

@RossJeanette Thanks for joining us tonight! #hpm

Wed Feb 29 18:05:37 PST 2012

FMDChat

@aliciabloom So glad you could be here with us - basketball and all! #hpm
Wed Feb 29 18:05:58 PST 2012

FMDChat

@rfberry Thanks to you for providing this opportunity to draw attention to rare diseases on Rare Disease Day. #hpm
Wed Feb 29 18:06:41 PST 2012

rfberry

@FMDChat that link didn't work for me... but hello, Thanks for hosting Sarah! #hpm
Wed Feb 29 18:07:24 PST 2012

aliciabloom

MSW, LSW practicing in #hospice & #palliative care. passionate about raising awareness & improving access to #hpm.
Wed Feb 29 18:07:25 PST 2012

aliciabloom

@FMDChat thanks! happy to be here. #hpm

Wed Feb 29 18:07:41 PST 2012

jfclearywisc

Jim Cleary UW palliative care and pain & policy studies group joining hospice & palliative medicine tweetchat for next hour #hpm
Wed Feb 29 18:08:32 PST 2012

RossJeanette

link again http://t.co/ZV0JtzHi #hpm

Wed Feb 29 18:08:38 PST 2012

KnowYourWishes

#hpm Hi all! Been awhile. Pulm/critical care fellow and author, end of life awareness advocate
Wed Feb 29 18:09:25 PST 2012

schwartzbrown

Mindy here, retired social worker from NJ #hpm

Wed Feb 29 18:09:26 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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FMDChat

@jfclearywisc Good evening, Jim. Thanks for joining in the chat. #hpm
Wed Feb 29 18:09:31 PST 2012

rfberry

Hey Jim @Jfclearywisc & @RossJeanette (last year when I met you IRL I wanted to call you Ross) & Alicia! @AliciaBloom #hpm
Wed Feb 29 18:09:53 PST 2012

rfberry

Jim & Jeaneatte, you or anyone else attending @AAHPM next week? I'm sooo excited! #hpm
Wed Feb 29 18:10:22 PST 2012

FMDChat

@KnowYourWishes Welcome back, @KnowYourWishes. Good to see you @schwartzbrown! #hpm

Wed Feb 29 18:10:25 PST 2012

FMDChat

We'll delve in to tonight's T1... #hpm

Wed Feb 29 18:11:04 PST 2012

jfclearywisc

@rfberry Yep ONe of @ctsinclair SOC med ambassadors! #hpm

Wed Feb 29 18:11:21 PST 2012

jfclearywisc

@rfberry Yep ONe of @ctsinclair SOC med ambassadors! #hpm

Wed Feb 29 18:11:21 PST 2012

FMDChat

T1) Awareness first do you personally know a rare disease patient? If so, how do you seek to understand his or her disease? #hpm
Wed Feb 29 18:11:57 PST 2012

rfberry

@jfclearywisc @ctsinclair awesome! That will be a great #hpm team up there!

Wed Feb 29 18:12:00 PST 2012

rfberry

(my computer is going pretty slow & internet spotty, apologies ahead of time if I take a while to respond) #hpm
Wed Feb 29 18:13:17 PST 2012

jfclearywisc

@FMDChat Care for many in both oncology and palliative care. some teenagers #hpm
Wed Feb 29 18:14:08 PST 2012

RossJeanette

yes I will be at AAHPM looking forward to seeing the HPM tweetpeople IRL. my internet is a bit slow #hpm
Wed Feb 29 18:15:17 PST 2012

rfberry

T1 @FMDChat I try to just get to know the person, over time I ask abt their experience w/the disease if they are open to talking abt it #hpm
Wed Feb 29 18:15:58 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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kcscadx2

Glad to be here to. #hpm

Wed Feb 29 18:16:22 PST 2012

KnowYourWishes

what are we considering rare? #hpm #hpm

Wed Feb 29 18:16:28 PST 2012

RossJeanette

T1 I don't personally know anyone with a rare disease #hpm

Wed Feb 29 18:16:51 PST 2012

jfclearywisc

@FMDChat I never make assumptions even with common diseases. SO I always ask about impact & understanding of disease #hpm
Wed Feb 29 18:17:06 PST 2012

aliciabloom

occasionally take care of people with rare diseases. patients are experts in their lives & their disease trajectories...so, i ask them. #hpm
Wed Feb 29 18:17:21 PST 2012

authordhallman

Hi hpm tweetchatters. It's been awhile. re T1 - sorry for my naivete but I suppose ALS is not considered a "rare" disease. #hpm
Wed Feb 29 18:17:34 PST 2012

FMDChat

@KnowYourWishes Any disease affecting fewer than 200,000 Americans is considered rare. #hpm
Wed Feb 29 18:17:42 PST 2012

jfclearywisc

MT @aliciabloom: I take care of people w rare diseases. patients are experts in their lives & disease trajectories...so, i ask them. #hpm
Wed Feb 29 18:18:17 PST 2012

FMDChat

@kcscadx2 @authordhallman Thanks for joining us. #hpm

Wed Feb 29 18:18:18 PST 2012

rfberry

@jfclearywisc that seems so obvious, but yet not always implemented, sign of a great physician #hpm
Wed Feb 29 18:18:22 PST 2012

rfberry

RT @jfclearywisc: @FMDChat I never make assumptions even with common diseases. SO I always ask about impact & understanding of disease #hpm
Wed Feb 29 18:18:26 PST 2012

FMDChat

@KnowYourWishes A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000. #hpm
Wed Feb 29 18:19:14 PST 2012

aliciabloom

MT @jfclearywisc: I never make assumptions even with common diseases. SO I always ask about impact & understanding of disease <-- yes! #hpm
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6/27/12 1:01 PM

Wed Feb 29 18:19:20 PST 2012

rfberry

@FDMChat as someone that has a rare disease, how do you prefer people get to know you as well as your experience with your illness? #hpm
Wed Feb 29 18:20:46 PST 2012

KnowYourWishes

I just googled Cystic Fibrosis, and found only 30,000 americans have it. So i suppose CF is rare! We see it a lot at my hospital tho #hpm
Wed Feb 29 18:20:48 PST 2012

schwartzbrown

In some ways, everyone with a chronic illness considers it rare. And that's legit #hpm
Wed Feb 29 18:21:32 PST 2012

KnowYourWishes

T1 CF patients have completely different lifestyles than others their age, important to talk about issues that creates 4 them #hpm
Wed Feb 29 18:22:18 PST 2012

FMDChat

@authordhallman Actually, yes ALS is a rare disease. http://t.co/oRMJPlGH #hpm

Wed Feb 29 18:23:13 PST 2012

aliciabloom

rare diseases are generally less understood- can create stigma or feeling of isolation. important to acknowledge psychosocial impact. #hpm
Wed Feb 29 18:23:23 PST 2012

schwartzbrown

@KnowYourWishes I was thinking of CF pts when I said that about each pt feeling it's rare. It's very isolating #hpm
Wed Feb 29 18:23:40 PST 2012

jfclearywisc

MT @KnowYourWishes T1 CF patients have completely different lifestyles than others their age, impt 2 talk re issues that creates 4 them #hpm
Wed Feb 29 18:23:56 PST 2012

kcscadx2

open w/them if they want to know about illness, alot don't understand rare illnesses #hpm
Wed Feb 29 18:24:12 PST 2012

FMDChat

@rfberry I find that ppl are very surprised to learn abt my disease. I "look healthy," which is a cure of many invisible illnesses. #hpm
Wed Feb 29 18:24:14 PST 2012

RossJeanette

T1 I like to ask tell me what a typical day is like for you? #hpm
Wed Feb 29 18:24:20 PST 2012

jfclearywisc

MT @aliciabloom: rare diseases: generally less understood- can create stigma or feeling of isolation. Acknowledge psychosocial impact! #hpm
Wed Feb 29 18:24:59 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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rfberry

@KnowYourWishes interesting! I don't know numbers on what I've been struggling with for Sacroiliac joint pain, but I bet its 'rare' #hpm
Wed Feb 29 18:25:04 PST 2012

KnowYourWishes

Very specific EOL issues in ALS: tough and rewarding @FMDChat: @authordhallman, yes ALS is a rare disease. http://t.co/MqJ83fGm #hpm
Wed Feb 29 18:25:07 PST 2012

FMDChat

Cystic fibrosis is another on the list of rare diseases. http://t.co/OlW0zAPp #hpm

Wed Feb 29 18:25:14 PST 2012

rfberry

@FMDChat interesting. Do you feel open in wanting to discuss it with people? #hpm
Wed Feb 29 18:25:26 PST 2012

ShyDi47

Hi everyone nice to see everyone. #Hpm

Wed Feb 29 18:25:30 PST 2012

KnowYourWishes

when I say rewarding, i mean rewarding to counsel patients and families. #hpm
Wed Feb 29 18:25:53 PST 2012

authordhallman

@FMDChat Thanks. A friend has been diagnosed w ALS. Deteriorating v rapidly. His partner doing most things for him but VERY stressed. #hpm
Wed Feb 29 18:26:04 PST 2012

kcscadx2

Look very healthy on the outside, inside is not healthy but very hard for someone to understand #hpm
Wed Feb 29 18:26:07 PST 2012

rfberry

I tend to be very closed about the amount of my daily pain. I don't know why, sometimes I just feel overwhelmed/emotional discussing it #hpm
Wed Feb 29 18:26:08 PST 2012

ShyDi47

So many PTS suppress their feelings once dx with a disease. #Hpm

Wed Feb 29 18:26:13 PST 2012

FMDChat

@rfberry I'll discuss my diagnosis w/ just abt anyone who will listen! I hope that my openness helps others reach a diagnosis. #hpm
Wed Feb 29 18:26:38 PST 2012

rfberry

great starting point RT @RossJeanette: T1 I like to ask tell me what a typical day is like for you? #hpm
Wed Feb 29 18:26:45 PST 2012

ShyDi47

Educating yourself of the disease is a start of getting as much info on the disease. #Hpm
Wed Feb 29 18:27:02 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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rfberry

RT @kcscadx2: Look very healthy on the outside, inside is not healthy but very hard for someone to understand #hpm
Wed Feb 29 18:27:08 PST 2012

kcscadx2

Always open to discuss it, word of mouth is a great tool. #hpm

Wed Feb 29 18:27:11 PST 2012

FMDChat

In talking about caring, we're transitioning nicely into T2, coming up in just a minute... #hpm
Wed Feb 29 18:27:47 PST 2012

KnowYourWishes

@authordhallman ALS center at my hospital 2. See lots of amazing things even in those who can't speak. Robotics amazing!Inspirational #hpm
Wed Feb 29 18:28:06 PST 2012

ShyDi47

@authordhallman so sad one of my pt died with ALS very heartbreaking it was only 47 @ time of death #Hpm
Wed Feb 29 18:28:26 PST 2012

cysticbot

#cysticbot RT: Cystic fibrosis is another on the list of rare diseases. http://t.co/Id1j4Tfh #hpm: Cystic fibros... http://t.co/N4OaqQe8
Wed Feb 29 18:28:38 PST 2012

rfberry

@FMDChat you're brave :) I admire that about you. #hpm

Wed Feb 29 18:28:45 PST 2012

aliciabloom

i like to ask: "what's most distressing for you?" allows patients to speak about more than just the disease & physical impact. #hpm
Wed Feb 29 18:28:53 PST 2012

FMDChat

T2 Preface) 350 million people in the world suffer from >7,000 rare diseases, 95% of which have no therapy #hpm
Wed Feb 29 18:29:15 PST 2012

authordhallman

@KnowYourWishes What hospital are you with in Philly? My friends live in Rehobath Beach. #hpm
Wed Feb 29 18:29:44 PST 2012

ShyDi47

So many diseases out there @ hard to stay on top of each @ everyone of them. Each disease affects pt differently. #Hpm
Wed Feb 29 18:30:12 PST 2012

KnowYourWishes

Skilled social workers/RNs very impt in tx'ing rare diseases.experience and extra time MDs treating may not have. RNs/SW invaluable! #hpm
Wed Feb 29 18:30:16 PST 2012

FMDChat

T2) What are some of the subtle ways in which caregivers may provide comfort to patients without pharmacological treatments? #hpm #hpm
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6/27/12 1:01 PM

Wed Feb 29 18:30:17 PST 2012

rfberry

RT @AlexSmithMD: Increase NIH budget next fiscal year! A flat $30.7 billion will kill geripal research. http://t.co/Kh0IrVQQ #hpm #geria ...
Wed Feb 29 18:30:32 PST 2012

ShyDi47

Holistic approach @ active listening works with pt @ family. #Hpm

Wed Feb 29 18:31:14 PST 2012

kcscadx2

Positive approach, even if all treatments don't work. There is always a success if you look for it. #hpm
Wed Feb 29 18:31:52 PST 2012

rfberry

RT @FMDChat: T2 Preface) 350 million people in the world suffer from >7,000 rare diseases, 95% of which have no therapy #hpm
Wed Feb 29 18:31:56 PST 2012

aliciabloom

i encourage family caregivers to be just be present. offers support, reassurance & comfort. #hpm
Wed Feb 29 18:33:00 PST 2012

KnowYourWishes

@FMDChat T2: Time. Extra Time. #hpm

Wed Feb 29 18:33:05 PST 2012

rfberry

T2 be present. #hpm
Wed Feb 29 18:33:25 PST 2012

KnowYourWishes

RT @rfberry: T2 be present. #hpm

Wed Feb 29 18:33:43 PST 2012

rfberry

RT @aliciabloom: i encourage family caregivers to be just be present. offers support, reassurance & comfort. #hpm
Wed Feb 29 18:34:12 PST 2012

ShyDi47

Mind vs power, don't give up. #Hpm

Wed Feb 29 18:34:18 PST 2012

aliciabloom

looks like great minds think alike @rfberry ;) #hpm

Wed Feb 29 18:34:23 PST 2012

jfclearywisc

RT @aliciabloom: i encourage family caregivers to be just be present. offers support, reassurance & comfort. #hpm
Wed Feb 29 18:34:35 PST 2012

FMDChat

@rfberry Explain, if you will, "be present." Literally, emotionally? #hpm

Wed Feb 29 18:34:39 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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ShyDi47

Working as a multi disciplinary team is vital in treating the pt, family @ the disease. #Hpm
Wed Feb 29 18:35:17 PST 2012

schwartzbrown

Very hard for youngsters to grow up with illness like CF. Desire is to be like everyone else. Caregivers often seen as "enforcers." #hpm
Wed Feb 29 18:35:25 PST 2012

aliciabloom

@ShyDi47 i am careful about language like "don't give up." patients don't give up, sometimes we run out curative options and/or time. #hpm
Wed Feb 29 18:36:39 PST 2012

KnowYourWishes

@schwartzbrown yes, and have to deal with grown up issues very early in life. #hpm
Wed Feb 29 18:37:02 PST 2012

FMDChat

@schwartzbrown I love that you've brought up the topic of "enforcers" concept applies to so many pts' caregivers, regardless of age. #hpm
Wed Feb 29 18:37:16 PST 2012

ShyDi47

Getting everyone's input @ feedback, @ asking questions is important in any therapeutic relationship. #Hpm
Wed Feb 29 18:37:34 PST 2012

rfberry

as soon as I pushed send I saw yours haha! RT @aliciabloom: looks like great minds think alike @rfberry ;) #hpm
Wed Feb 29 18:37:45 PST 2012

KnowYourWishes

CF kids need 1-2 hour neb treatments 4X per day or more. Slows down a kid who just wants to play. Hard for 'enforcers' #hpm
Wed Feb 29 18:38:20 PST 2012

aliciabloom

@rfberry it's awesome! #hpm

Wed Feb 29 18:38:40 PST 2012

rfberry

Both: Consistently, Truly Demonstrating Active Listening RT @FMDChat Explain, if you will, "be present." Literally, emotionally? #hpm
Wed Feb 29 18:38:41 PST 2012

ShyDi47

@aliciabloom yes I have seen this with my EOL PTS where they r giving up very sad to watch for sure, heartbreaking 4 family 2 watch #Hpm
Wed Feb 29 18:38:51 PST 2012

FMDChat

I've found I need my caregivers to be supportive by leaving me alone sometimes... being hovered over gets old... #hpm
Wed Feb 29 18:39:15 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?ha&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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jfclearywisc

RT @FMDChat: I've found I need my caregivers to be supportive by leaving me alone sometimes... being hovered over gets old... #hpm
Wed Feb 29 18:39:36 PST 2012

KnowYourWishes

@FMDChat Spending time alone is one of the 'domains' of quality of EOL care. #hpm
Wed Feb 29 18:40:05 PST 2012

ShyDi47

@FMDChat and quiet time is healthy in a therapeutic relationship as well good point #Hpm
Wed Feb 29 18:40:54 PST 2012

aliciabloom

@ShyDi47 i don't think we should look at it as "giving up." treatments fail, organs fail, but...patients do not fail. #hpm
Wed Feb 29 18:40:56 PST 2012

FMDChat

@KnowYourWishes Indeed! I'm not incapable of being left alone just yet please don't take that ability from me before necessary. #hpm
Wed Feb 29 18:41:14 PST 2012

AnkurB_MD

RT @FMDChat: T2 Preface) 350 million people in the world suffer from >7,000 rare diseases, 95% of which have no therapy #palliative #hpm
Wed Feb 29 18:41:18 PST 2012

rfberry

@aliciabloom absolutely. #hpm

Wed Feb 29 18:41:39 PST 2012

jfclearywisc

RT @aliciabloom: @ShyDi47 i don't think we should look at it as "giving up." treatments fail, organs fail, but...patients do not fail. #hpm
Wed Feb 29 18:41:39 PST 2012

maggiemahar

RT @DianeEMeier: Open #Palliative care to all patients, regardless of prognosis: http://t.co/SQ1YytFA #HPM
Wed Feb 29 18:41:47 PST 2012

rfberry

RT @aliciabloom: @ShyDi47 i don't think we should look at it as "giving up." treatments fail, organs fail, but...patients do not fail. #hpm
Wed Feb 29 18:41:47 PST 2012

KathyKastner

RT @aliciabloom: @ShyDi47 i don't think we should look at it as "giving up." treatments fail, organs fail, but...patients do not fail. #hpm
Wed Feb 29 18:42:39 PST 2012

tsuliena

@aliciabloom when I do open up (introverted) describe how serious my pain is_since I don't look the part, I get the brush off.#hpm #spoonie
Wed Feb 29 18:42:39 PST 2012

AlexYperifanos

RT @DianeEMeier: Open #Palliative care to all patients, regardless of prognosis: http://t.co/SQ1YytFA #HPM
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6/27/12 1:01 PM

Wed Feb 29 18:42:46 PST 2012

FMDChat

We've talked about caring for the patient... now let's talk about caring for the caregiver! T3 coming right up... #hpm
Wed Feb 29 18:42:55 PST 2012

KathyKastner

RT @DianeEMeier: Open #Palliative care to all patients, regardless of prognosis: http://t.co/SQ1YytFA #HPM
Wed Feb 29 18:43:03 PST 2012

KnowYourWishes

@KathyKastner Hi Kathy!!! #hpm

Wed Feb 29 18:43:09 PST 2012

AnkurB_MD

Love it!! RT @aliciabloom i don't think we should look at it as "giving up." treatments fail, organs fail, but...patients do not fail. #hpm
Wed Feb 29 18:43:24 PST 2012

ShyDi47

I have observed an elderly man refuse 2 eat anymore. His family was livid, but that was his choice @ wishes nothing we could of done. #Hpm
Wed Feb 29 18:43:30 PST 2012

KathyKastner

@KnowYourWishes Hey! LJ Gr8 new name #hpm!

Wed Feb 29 18:43:48 PST 2012

ShyDi47

Caregivers need to have a good support system in place, @ they need to be listened to as well. #Hpm
Wed Feb 29 18:44:16 PST 2012

FMDChat

T3 How can nonpharmacological care extend beyond patients to include families and how can we measure effectiveness of nonpharm care? #hpm
Wed Feb 29 18:44:31 PST 2012

aliciabloom

@tsuliena thank you for sharing. it's important for us clinicians to never make assumptions about the people we care for-- always ask #hpm
Wed Feb 29 18:44:59 PST 2012

aliciabloom

@AnkurB_MD thanks! #hpm

Wed Feb 29 18:45:11 PST 2012

rfberry

@ShyDi47 While I understand it may feel like nothing can be done by the family, there absolutely is 'something' that can be done #hpm
Wed Feb 29 18:45:35 PST 2012

rfberry

@ShyDi47 appropriate comfort care is something #hpm

Wed Feb 29 18:45:56 PST 2012

I think the term "orphan disease" captures the loneliness many caregivers feel. They need
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schwartzbrown

to feel understood. #hpm

Wed Feb 29 18:46:16 PST 2012

KathyKastner

RT @schwartzbrown: I think the term "orphan disease" captures the loneliness many caregivers feel. They need to feel understood. #hpm
Wed Feb 29 18:46:44 PST 2012

ShyDi47

@rfberry His wishes he did die, had a terminal illness @ he was 96 yrs old he was done #Hpm
Wed Feb 29 18:46:51 PST 2012

aliciabloom

there is always something we can do! even when treatments fail & organs fail, we can do aggressive symptom management, dignity, comfort #hpm
Wed Feb 29 18:46:52 PST 2012

FMDChat

@schwartzbrown Do you think caregivers feel the same sense of isolation regarding the particular disease as the patient? #hpm
Wed Feb 29 18:47:14 PST 2012

KnowYourWishes

T3: huge research lit on ways/methods to "measure" quality of EOL care. A huge passion of mine! Lots of interest'g ideas out there #hpm
Wed Feb 29 18:47:16 PST 2012

authordhallman

When I was caring for my dying partner, the pall/care staff spent a lot of time just listening to me as the caregiver. #hpm
Wed Feb 29 18:47:36 PST 2012

aliciabloom

@ShyDi47 @rfberry the desire to eat is a normal part of the dying process. decreased appetite common, not necessarily an active choice. #hpm
Wed Feb 29 18:48:01 PST 2012

kcscadx2

no question about it, it's a dark tunnel. #hpm

Wed Feb 29 18:48:20 PST 2012

KathyKastner

4 sure RT @FMDChat: @schwartzbrown Do u think caregivers feel the same sense of isolation regarding particular disease as the patient? #hpm
Wed Feb 29 18:48:22 PST 2012

schwartzbrown

@FMDChat Yes I do think caregivers feel similar isolation in addition to guilt and helplessness #hpm
Wed Feb 29 18:48:31 PST 2012

ShyDi47

Once all the domains have been addressed in EOL pt the only thing that can be done is comfort measures @ that is it #Hpm
Wed Feb 29 18:48:48 PST 2012

KathyKastner

RT @schwartzbrown: @FMDChat Yes I do think caregivers feel similar isolation in addition

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6/27/12 1:01 PM

to guilt and helplessness #hpm

Wed Feb 29 18:48:55 PST 2012

aliciabloom

family caregivers can become isolated as they spend so much time meeting the patient's needs. important to encourage self-care. #hpm
Wed Feb 29 18:49:05 PST 2012

rfberry

@aliciabloom I think you mean loosing the desire to eat is a normal part of the dying process #hpm
Wed Feb 29 18:49:47 PST 2012

schwartzbrown

often diseases have genetic origins that create guilt for family members #hpm
Wed Feb 29 18:50:34 PST 2012

ShyDi47

I also find families/caregivers stop taking care of themselves so they get o/whelmed @ stressed out which is not good. #Hpm
Wed Feb 29 18:50:40 PST 2012

rfberry

agree RT @schwartzbrown: @FMDChat Yes I do think caregivers feel similar isolation in addition to guilt and helplessness #hpm
Wed Feb 29 18:50:50 PST 2012

FMDChat

@KathyKastner @schwartzbrown You're motivating me to see what I can do w/in my own disease group to help caregivers! #hpm
Wed Feb 29 18:51:06 PST 2012

aliciabloom

@rfberry yes, i did. losing the desire to eat is a normal part of the dying process. decreased appetite is a 'symptom' not a choice #hpm
Wed Feb 29 18:51:17 PST 2012

rfberry

@schwartzbrown @FDMChat Incredible #Caregiver Advocates at @CaregiverAlly, great research, stats, resources #hpm
Wed Feb 29 18:51:31 PST 2012

ShyDi47

Once a patient's PPS is below 30 they don't eat anymore. They r shutting down. #Hpm
Wed Feb 29 18:52:08 PST 2012

rfberry

@aliciabloom yes. Support groups are sometimes hard to get to, but can also be so helpful for caregivers. #hpm
Wed Feb 29 18:52:34 PST 2012

KathyKastner

@FMDChat ANd I just learned that 'hovering' gets old. Such complicated co-reliance we have #hpm
Wed Feb 29 18:52:51 PST 2012

FMDChat

@KathyKastner We love you for the hovering. We know you mean well. : ) #hpm
Wed Feb 29 18:53:40 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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6/27/12 1:01 PM

schwartzbrown

Lots of caregivers- I'm thinking of parents, don't think they deserve the time for themselves for support groups #hpm
Wed Feb 29 18:53:58 PST 2012

KnowYourWishes

Spending time with pets important too- often overlooked. Completely ABSENT in ICU (sadly). Wish we could bring in animals. #hpm
Wed Feb 29 18:54:05 PST 2012

DrBeckerSchutte

RT @schwartzbrown: Lots of caregivers- I'm thinking of parents, don't think they deserve the time for themselves for support groups #hpm
Wed Feb 29 18:54:31 PST 2012

rfberry

Agree (w/balance aka listening when asking 4space) RT @FMDChat @KathyKastner We love you for the hovering. We know you mean well : ) #hpm
Wed Feb 29 18:54:46 PST 2012

aliciabloom

@KnowYourWishes we have pet therapy & welcome family pets on our inpatient hospice units-- huge comfort for many of our patients! #hpm
Wed Feb 29 18:55:05 PST 2012

FMDChat

@KnowYourWishes I would have paid GOOD MONEY for a TV set to Animal Planet in ICU. #hpm
Wed Feb 29 18:55:05 PST 2012

DrBeckerSchutte

@schwartzbrown I listened to a psychologist talk about caregivers today--and her number one point was the need to emphasize self-care. #hpm
Wed Feb 29 18:55:06 PST 2012

KathyKastner

@FMDChat <3 funnily enuf, I'm not a hoverer but my sister is and I often wondered if my mom wanted space #hpm
Wed Feb 29 18:55:07 PST 2012

aliciabloom

it's hard for family caregivers to break away. important to help them see their own self-care as important for the care of the patient. #hpm
Wed Feb 29 18:55:53 PST 2012

rfberry

@KnowYourWishes some places allow animals. @StanfordHosp has a PawPals program with visiting pets for patients #hpm
Wed Feb 29 18:56:02 PST 2012

ShyDi47

Boundaries, culture, and respecting the patients wishes is important in how they want or choose to die. #Hpm
Wed Feb 29 18:56:45 PST 2012

authordhallman

Re HPM T3: As the caregiver, I was often resistant to take time off. Mainly afraid that Bill would die while I was away. #hpm
Wed Feb 29 18:56:51 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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6/27/12 1:01 PM

KnowYourWishes

@aliciabloom Yeah. Would cheer us up in ICU too though...not just inpatient hospice. Also would be good for ICU staff #hpm
Wed Feb 29 18:56:52 PST 2012

rfberry

@FMDChat interesting, when will all hospitals provide personal computers (w/fast) internet access to any patient that requests it? #hpm
Wed Feb 29 18:57:04 PST 2012

KathyKastner

Self-care often fraught w guilt and worry about perecption of abandoning pt #hpm
Wed Feb 29 18:57:09 PST 2012

FMDChat

We're coming up on the end of our hour. Please share your thoughts as we close out tonight's sessionrare disease related or otherwise! #hpm
Wed Feb 29 18:57:51 PST 2012

DrBeckerSchutte

We need a reframe here for sure! RT @KathyKastner: Self-care often fraught w guilt and worry about perecption of abandoning pt #hpm
Wed Feb 29 18:58:09 PST 2012

KathyKastner

@authordhallman same with my bro and his late wife. she eventually said: please go, bring back fresh air #hpm
Wed Feb 29 18:58:15 PST 2012

KnowYourWishes

RT @FMDChat: @KnowYourWishes I would have paid GOOD MONEY for a TV set to Animal Planet in ICU. #hpm
Wed Feb 29 18:58:24 PST 2012

ShyDi47

Self care is great only if they r able to. Trying 2 promote independence is all good if they r still able to. #Hpm
Wed Feb 29 18:58:44 PST 2012

NaheedD

@KathyKastner is there an #hpm chat? when does it usually occur?

Wed Feb 29 18:58:50 PST 2012

aliciabloom

need to help family caregivers see their own self-care as important to continued care of their loved one. relieve guilt, reframe it! #hpm
Wed Feb 29 18:58:52 PST 2012

KathyKastner

@DrBeckerSchutte re-frame: oh yeah! #hpm

Wed Feb 29 18:58:58 PST 2012

maggiemahar

RT @ShyDi47: Self care is great only if they r able to. Trying 2 promote independence is all good if they r still able to. #Hpm
Wed Feb 29 18:59:23 PST 2012

FMDChat

I encourage you all to spend a few moments learning about Rare Disease Day by visiting
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http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

#hpm - Healthcare Social Media Transcript

6/27/12 1:01 PM

http://t.co/gmz1pWCz. #hpm
Wed Feb 29 18:59:25 PST 2012

DrBeckerSchutte

@KathyKastner Caregivers need to understand when they avoid self-care, they increase guilt in patients--and their care is diminished. #hpm
Wed Feb 29 18:59:30 PST 2012

KathyKastner

@NaheedD Every Wednesday 8-9pm. Amazing tweeps.. #hpm

Wed Feb 29 18:59:34 PST 2012

jfclearywisc

RT @FMDChat: I encourage you all to spend a few moments learning about Rare Disease Day by visiting http://t.co/Em4Swg9o. #hpm
Wed Feb 29 19:00:10 PST 2012

KathyKastner

@DrBeckerSchutte Yeah, I think there are many communication /misperception issues w caretivers/pts #hpm
Wed Feb 29 19:00:20 PST 2012

DrBeckerSchutte

I live for the reframe! RT @KathyKastner: @DrBeckerSchutte re-frame: oh yeah! #hpm

Wed Feb 29 19:00:34 PST 2012

authordhallman

Thanks HPM friends. Good tweetchat. #hpm

Wed Feb 29 19:00:46 PST 2012

rfberry

Info here: http://t.co/lecNv5U0 (thanks Kathy!) RT @KathyKastner @NaheedD Every Wednesday 8-9pm CST. Amazing tweeps #hpm
Wed Feb 29 19:00:47 PST 2012

schwartzbrown

Will do. Thanks all #hpm

Wed Feb 29 19:00:52 PST 2012

ctsinclair

The #hpm Daily is out! http://t.co/hXekg5Al Top stories today via @rfberry @seasonshospice @emilyamuse @compandchoices
Wed Feb 29 19:01:18 PST 2012

rfberry

RT @FMDChat I encourage you all to spend a few moments learning about Rare Disease Day by visiting http://t.co/Dxh42lDN #hpm
Wed Feb 29 19:01:26 PST 2012

KathyKastner

Geez,. Didn't realize that one. thanks Mindy RT @schwartzbrown: often diseases have genetic origins tht create guilt for family members #hpm
Wed Feb 29 19:01:44 PST 2012

DrBeckerSchutte

@KathyKastner Caregiving is such an isolated and heartbreaking path at times. But it can also be an an amazing gift to self & loved one #hpm
Wed Feb 29 19:01:45 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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6/27/12 1:01 PM

rfberry

@FMDChat Thanks for hosting! Appreciate being able to take some time & discuss topics for Rare Disease Day. Keep up the advocacy! #hpm
Wed Feb 29 19:02:13 PST 2012

FMDChat

Thank you for your participation tonight! Best wishes to all for a safe and healthful rest of the week. #hpm
Wed Feb 29 19:02:26 PST 2012

ShyDi47

Making sure the pt @ family r happy @ content with the care they r receiving. Make sure pt needs r being fully met. #Hpm
Wed Feb 29 19:02:35 PST 2012

KathyKastner

RT @schwartzbrown: In some ways, everyone with a chronic illness considers it rare. And that's legit #hpm
Wed Feb 29 19:03:02 PST 2012

ShyDi47

Just like any occupation caregiving can be rewarding and fulfilling but it is not a job for everyone #Hpm
Wed Feb 29 19:03:42 PST 2012

rfberry

Shared Decision Making featured on @NEJM The Pinnacle of Patient-Centered Care http://t.co/4TFhqv2F via @afrakt #hpm #s4pm #NHDD
Wed Feb 29 19:04:05 PST 2012

KathyKastner

@FMDChat Amazinhg hosting. So much I get to learn. Thanks all. #hpm

Wed Feb 29 19:04:23 PST 2012

ShyDi47

Great chat everyone hopefully I will see each of you next week. Have a great rest of the week. #Hpm
Wed Feb 29 19:04:27 PST 2012

KnowYourWishes

Thx for the chat as always! I missed #hpm. Hope to be back more consistently! G'night all! #hpm
Wed Feb 29 19:04:30 PST 2012

KathyKastner

+1 RT @KnowYourWishes: Thx for the chat as always! I missed #hpm. Hope to be back more consistently! G'night all! #hpm
Wed Feb 29 19:04:49 PST 2012

FMDChat

@FMDChat Thank you again for the opportunity. Please visit us at http://t.co/vsdVPbgV & on the new webpage at http://t.co/ZZOJRUzA. #hpm
Wed Feb 29 19:04:50 PST 2012

KThomtweets

RT @schwartzbrown: In some ways, everyone with a chronic illness considers it rare. And that's legit #hpm
Wed Feb 29 19:05:36 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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6/27/12 1:01 PM

aliciabloom KathyKastner

thanks to @FMDChat for hosting tonight's #hpm chat!

Wed Feb 29 19:05:40 PST 2012

LOL. I'm with ya RT @DrBeckerSchutte: I live for the reframe! RT @KathyKastner: @DrBeckerSchutte re-frame: oh yeah! #hpm
Wed Feb 29 19:05:52 PST 2012

ShyDi47

Be thankful for what u do have @ not for what u don't have. Something to think about. xo #Hpm
Wed Feb 29 19:06:10 PST 2012

milhealth

RT @rfberry: RT @FMDChat encourage all 2spend a few moments learning about Rare Disease Day by visiting http://t.co/qVboLThp #hpm
Wed Feb 29 19:07:10 PST 2012

http://hashtags.symplur.com/healthcare-hashtag-transcript.php?h&smin=0&tdate=02-29-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1

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